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Sending 2 PANDAS to camp on Monday


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Just a quick note to let everyone that is doubting themselves know that there is hope!

 

We are sending DD7 and DS10 to camp next week. Both kids are doing well overall.... definately well enought to go to camp. I am a bit worried about DS10 as he has bedtime rituals that involve me... (say good night/kiss goodnight 3 times abd say a little matra) .... Both kids continued to improve once school was out... so I think I am ready for this... They are SOOOOOO excited to go so I know that they are ready! I am a bit worried as they are not on prof antibitoc anymore... we have not had any since May.... (knock on wood)

 

also.... quick backtrack update.... we postponed our consult with Dr K.... we wanted to wait on the IVIG since the kids seem to be improving.... our ped wont prescribe prof antibitoc and we are going to see the infect. dis. Dr when the kids get back from camp in hopes that he will put them both on something before school starts... We have had trouble getting in touch with Dr T - but I still leave periodic messages and he was a life saver for us...

 

Thanks to everyone who supported us through our personal ###### - I know that many of you are still living it - and I know all too well that we can slide back there at any moment.... the kids arent 100% - I would say 85-90ish but that is a far cry from where we were when I started 'crying out for help"

 

Hugs!

Stephanie

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Happy to hear about your sons doing well! ;)

I've been to three "Camps" (second grade, third grade, & sixth grade) & loved them all. The first two were before I was diagnosed, when my tics were virtually unnoticeable & my compulsions were maneagable. The sixth grade one, however, was when my P.A.N.D.A.S. was at it's absolute worst. Needless to say, everyone involved was a little more than wary to be sending me off. It went great though! It's amazing how understanding people can be in a non-school environment like that. I'm sure your sons will have a great time! :)

Best wishes to you. <3

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I am so happy to hear that your children are doing well and that they get to enjoy camp and you get a little break!

 

This year will be my son's third year at sleep away camp. Fortunately, he has never been in an exacerbation during camp time. The first year he had pretty strong sleep rituals just before camp including sleeping with at least 30 stuffed animals - all lined up in a particular order to "protect"him, and having room for me to lay down with him while he fell asleep at night. He knew he would not be able to continue this at camp. Since he was not in exacerbation, this was more a learned behavior than a PANDAS ritual at that point. He went to camp and had a GREAT week. Said he was NOT afraid to go to sleep because there were so many other kids in the room. He came home and agreed he no longer needed the stuffed animals. We packed them into those really big ziplog bags, and put them in the closet. Six months later I moved them to the attic and they are still there today!

 

I hope you have fun and relaxing things planned for yourself. You deserve a personal vacation!

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Earnestfamily7........great news! It is always good to hear of kids improving. I have to tell you, when I read your post, a big red falg went up for me. Sending your PANDAS kids away to camp, where they will be in close contact with many other kids, without protective antibiotics, is very risky in my honest opinion. I would search around for a doc to give you antibiotics before they go. Just my advice. I am not trying to be a downer......really....just something to consider!

 

Hope all goes well!!!

Edited by P.Mom
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Thanks for the well wishes... and P.Mom I dont think of it as you comments as a downer... I had/have the same concerns. I thought it over though and the truth is even while home they are around kids... at the pool, sports camps, neighborhood and even without the antibiotics I cant make them stay put - I definatley want them on prof. antibiotic but until I can get back in touch w/ Dr T or find a local dr that will prescribe (which may be even harder since they are in a remission state) I will do my best to hide my fears from them and let them be kids and let them enjoy this time of normalcy (is that a word?!) and hope & pray for the best - I'll keep you posted.

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